DSM-5 proposals for Somatoform Disorders revised on April 27

This is the third and final DSM-5 public review and it will be the last chance for patients and patient organizations to submit their concerns.

In order that crucial information isn't getting lost amongst other posts in this thread, I have decided to put selected content on another WordPress site.

My Dx Revision Watch site covers both DSM-5 and ICD-11 and is aimed not just at CFS and ME patients but a wider patient and professional stakeholder readership and there is a lot of material on that site around the DSM-5 process that is not specific to the interests of readers of PR.

So that readers here can more readily find links to proposals for the CSSD/SDD criteria and the current rationale text, I have posted links on another WordPress site which isn't being used for anything else:

So far, I have seen no confirmation that any patient organizations intend to submit comment in this third review and I cannot confirm whether the Coalition 4ME/CFS intends to campaign this time for patients and professionals to submit concerns.

Phoenix Rising is a member of the C4ME/CFS so if Cort is reading this thread, perhaps he is able to advise whether C4ME/CFS will be campaigning (there are only four weeks left). But in any case, I would encourage all of you to contact as many patient orgs and professionals that you can and request that they submit.

I shall be re-contacting UK orgs this coming week since I have had no response from any of our UK patient orgs but I cannot undertake to chase US orgs.

There are now just three weeks left before the third and final draft review of DSM-5 proposals closes.

The Danish ME Association has confirmed that they will be submitting comment. Other than this organization, no other patient organization in the US, UK or elsewhere has confirmed whether or not they intend to submit in this third and final review.

Dr Joel E. Dimsdale's response to the question about CFS and DSM-5 during the Q & A session of his APA Conference presentation here:

So far, I have just four submissions from patients and advocates on my site and no submissions from any patient organizations, in the UK, EU, US or Australia. The chair of the Danish ME Association has confirmed that her organization does intend to submit again, this year and Action for M.E.'s Communications Officer has said that AfME are looking into submitting (they did submit in the last two reviews and also published a news item on their News Pages, last year). No responses from other UK patient orgs who were contacted shortly after the third draft was released on May 2.

The APA (or rather its PR firm) has just launched a new site called DSM-5 Facts“to correct the record” and provide the public with “a complete and accurate view of this important issue.”: http://wp.me/pKrrB-2cm

Suzy has graciously posted my submission, along with instructions on how to submit your comments and summary background material on her site. The 3 part document can be found at this link (current version of Word) or this link (Word 2004).

For those who are able to submit comments, feel free to pull from my letter or the rest of the document in any way that's helpful to you.

While Somatic Symptom Disorder (SSD) can be inappropriately applied to patients with any illness, it is especially important to ME/CFS patients because some in the medical community view ME/CFS as the 'poster child' for SSD.

The deadline to submit comments is June 15.
Thanks to Suzy for her tireless efforts on the DSM and on the ICD.
Mary

I'm sending Mary Dimmock's initiative "Call to action – DSM-5 comments needed by June 15, 2012" out for a second time for better formatting and to alert that there are just 10 days left for patients, professionals and patient organizations to get their concerns in.

In the DSM-5 field trials, 26% of the "functional somatic" arm of the study group met the criteria for coding with an additional mental health Dx of Somatic Symptom Disorder.

Come May 2013, patients are facing the prospect of a diagnosis of CFS + SSD.

Yet so far, I've had NO submissions in at all from any patient organizations anywhere in the world.

It is crucial that clinicians, researchers, health practitioners and patient organizations submit concerns and this is the last chance you'll get to do so.

Please get your submissions in before June 15 and please ask your professional colleagues to look at these criteria and submit, too.

Is hysteria dead? The question of its justification as a diagnostic entity has been raised before. Its dismissive potential coupled with its negative sociocultural connotations from which physicians are not except erode the fine borderline between medical diagnosis and emotional attitudes and justify its transition into the diagnostic museum.
However it is precisely this dismissive quality which makes the diagnosis of hysteria so valuable as it offers an expedient solution for a diagnostically confusing patient and provides a release of negative emotions or even punitive actions, under the guise of a respectful medical label.
For these very reasons, it is also quite safe to assume that hysteria as a concept is here to stay, irrespective of the formal diagnostic subclasifications.

We have demonstrated that seemingly random mistakes are not random at all. There is a logic and predictability to our misdiagnosis constructions. Hysteria-lends itself most readily to the needs of physicians who have their concepts challenged and thus need to dismiss the " problem patient" from their well-ordered world for emotional reasons of their own. In our split compartmentalized world of super-medicine such shifting of patients is the rule, sometimes with horrific results.

Diagnosis of misdiagnosis: On some of the origins and functions of psycho-physical misdiagnosis. Kutz et al. General hospital psychiatry 1983.

Historically the earliest Hysteria cases have been shown to fit symptomatic patterns for epilepsy, MS and syphilis. It has also been verifed (and I am only starting my research on this) that one of the classic psychiatric cases, that of Anna O., is loaded with factual inaccuracies and these days might well land the psychiatrists in trouble for scientific fraud.

In my view the diagnosis of hysteria is unethical. I am assembling evidence to make a case for this position.

In my opinion the real battle over DSM-V is yet to start. I have become almost convinced we will have little or no impact in its drafting - but we can still have major impact in its acceptance. It is likely we (those who are concerned, globally) can demonstrate that large parts of DSM-V are unfit for purpose.

with out realizing it psychiatry has indeed become a victim of its own success. Instead of humbly moving towards becoming a credible field of medicine, it gained unreasonable power by becoming a very convenient waste-basket into which all the problems of modern medicine and society can conveniently be tossed.​

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This can only lead to a very dismal long term prognosis to patients given those diagnoses (instead of addressing their true problems) and to the entire field. No one has much respect for waste bins, no matter how nicely designed they are.​

​

I think that the current DSM-V will lead to the eventual loss of credibility of psychiatry, neurology and possibly other fields of medicine (if other physicians will be stupid enough to use it). I doubt that there is much we can do about it. ( I have submitted some comments, but more for my needs to voice my opinion, than because I think that it will really make any difference).​

The concept of the field trials (if I understand it correctly) is ridiculous in my opinion. The fact that every one agrees that the the world is flat, doesn't make this a true or scientifically proven fact. Science is not based on democratic decisions but on proven facts. It is as ridiculous to ask for the public's opinion regarding what are supposedly medical diagnoses. ​

I do not see the American Society of Hematology asking for the opinion of patients with hematological malignancies nor the general public regarding the diagnostic criteria of those diseases. ​

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The diagnosis of hysteria is unethical, because it serves the needs of the physician not the patient.​

Giving a patient emotional support (which is an essential component of the physician-patient relationship in my opinion) is very different (and almost the opposite) from labeling the patient with "emotional problems" as a way of dismissing him. This diagnosis is uniformly accompanied by hostility, deceit, fake compassion, disrespect and not support or even true compassion. It many times (there is an argument in the medical literature of how often this happens) physically endangers the life of the patient by depriving him/her of proper medical care.​

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The prognosis of patients with this diagnosis is dismal. Morbidity, disability and mortality are unreasonably high for a group of relatively young "healthy" patients. The fact that very few are eventually found to have a missed diagnosis of a known neurological disease, is proof for nothing but the ongoing ignorance of their treating physicians, as well as their arrogant confidence in their previously wrong diagnosis. It also (probably) reflects the fact that such patients lose their desire to seek medical advice (so such a diagnosis will obviously not be found). One has to be very assertive and confident in order to be able to fight this prejudice for long and not give up and surrender in this nearly impossible war.​

I am aware that we are discovering several new neurological disorders every year. There was a paper recently (don't recall where) on newly discovered channelopathies - we are learning that a number of neurological disorders are actually brain channelopathies. In the case of CFS and ME there has been some evidence of channelopathy for many years though we still don't know enough to assess the impact of these findings. Medical science is not even close to done with discovering new disorders.

Don Quichotte, if you find good references to papers discussing blunders based on findings of hysteria I for one would be interested in knowing about them, and I am sure that others here would too.

I am aware that we are discovering several new neurological disorders every year. There was a paper recently (don't recall where) on newly discovered channelopathies - we are learning that a number of neurological disorders are actually brain channelopathies. In the case of CFS and ME there has been some evidence of channelopathy for many years though we still don't know enough to assess the impact of these findings. Medical science is not even close to done with discovering new disorders.

Don Quichotte, if you find good references to papers discussing blunders based on findings of hysteria I for one would be interested in knowing about them, and I am sure that others here would too.

I am aware that we are discovering several new neurological disorders every year. There was a paper recently (don't recall where) on newly discovered channelopathies - we are learning that a number of neurological disorders are actually brain channelopathies. In the case of CFS and ME there has been some evidence of channelopathy for many years though we still don't know enough to assess the impact of these findings. Medical science is not even close to done with discovering new disorders.

Don Quichotte, if you find good references to papers discussing blunders based on findings of hysteria I for one would be interested in knowing about them, and I am sure that others here would too.

Bye, Alex

Click to expand...

One of the mistakes (in my opinion) in trying to understand the biology of neurological disorders is searching for point abnormalities (such as a certain ion channel) instead of looking at pathways. This leads to major errors and dead ends in the understanding of such diseases. An abnormality in an ion channel or an abnormality in a down-stream protein can lead to very similar effects. This concept which is very well understood in other fields of medicine, is for some reason completely lacking in neurology.
My explanation for this (which may be wrong) is that because of the inherent complexity of this field, there is much more need for reductionism and much less ability for a flexible thought process. Possibly this is also the reason for the creation of the illogical disease entity of functional neurological disorder. http://www.dcn.ed.ac.uk/dcn/staff/displaystaff.asp?RecordID=122

if you find good references to papers discussing blunders based on findings of hysteria I for one would be interested in knowing about them, and I am sure that others here would too.

Click to expand...

What kind of information are you looking for?
One of the best papers is by Eliot Slater

, and than there are papers which are meant to show that he was mistaken (but in my opinion just prove the opposite).

The most fervent modern advocates of reason and of science have often suggested or implied that we are no longer generally susceptible to dangerous delusions such as gripped the minds of learned men in the great European witch-hunt of the sixteenth and seventeenth centuries. This is, I believe, but another example of the dangers of rationalism. For if we accept and allow ourselves to be guided by a view of cultural history which denies the very possibility of a witch-hunt taking place in our midst, we have created the ideal conditions for one to take place in front of our eyes without our even noticing what is happening.

Hi Don Quichotte, I am reading Richard Websters book right now (Why Freud Was Wrong), I am only on chapter four which discusses Anna O. The link you gave is part of chapter 5. I have encounted multiple references to Slater in various places but have not followed up as yet. This is a long term project for me. I am looking for repeated patterns of error in older psychosomatic diagnoses. Once I have clear points to look for I will then be applying that to ME and CFS literature. I am also interested in neurasthenia, not just hysteria.

It is relatively easy to understand why Freud's idea were so easily accepted by the medical community.

What I find harder to understand is why it was so easily accepted by those whose illness was managed based on those ideas.

A possible explanation is the need for control. His ideas gave an illusion that there is an explanation for the unexplained. If you are ready to put the efforts into understanding those underlying conflicts and subconcious motivations, you will be able to cure yourself. As those are painful experiences (or else you wouldn't hide them) you need the help of a therapist to go through this process. So, he gave a solution both to the unknown and the inherent loneliness which accompanies a serious illness.

People who are ill and disabled are ready to put any effort required and suffer significantly for the hope of being well again. They also inevitably become more dependent on those around them. Many times through this process they gradually learn to accept (at least to some extent) their illness and the way it effects their life, giving a sense of recovery. (even if no physical recovery took place).

It was a short step to use this same treatment approach for the usual miseries of life. If courageously recognizing your past and painful experiences can lead to recovery from a disabling illness, why wouldn't it help you recover from the loss of your job, or your boyfriend?

And as we all have some painful memories we can " dig" (and are highly motivated to do so when thinking that this will make us feel better), it is very easy to fall into this trap. ( I have heard of people going through psychotherapy for years).

I know from my own experience, that when my neurologist (a leading expert in the field) told me that there is nothing physical which can explain the severity of my symptoms (at that time I knew very little about it and fully trusted what he said) , I was quite relieved and glad to seek the advice of a psychologist. The thought that some " talking" could lead to resolution of my illness was very comforting.
Only after 6 months of futile attempts to find the "underlying cause " did I start doubting this approach for the first time. But, the thought that I actually may have a serious and even life threatening illness ( I was hospitalized in the ICU with what the ICU team thought was respiratory crisis and not emotional problems) which no one knows what to do about was so frightening that I continued this for another 6 months. Until (being a logical person) I could no longer ignore how ridiculous it all was and thanked her for her time and efforts, but told her that I have had enough. It was not entirely useless because it did give me some insights and made me question some of the concepts of modern medicine regarding " medically unexplained diseases" . She also encouraged me to find new talents I was not aware I had to compensate for what I have lost.

Does it really make sense,​

That someone whose father was angry at her when she was five ,​

Would now feel that she is barely alive?​

Does it really make sense,​

That someone whose gradfather was angry at her when she was four,​

Can't make the distance to the door?​

Do you really think that (when she was three) her gradma's angry look,​

Is the reason why she now can't read a book?​

Or maybe it's all because her brother who scared her screaming: Boom,​

Action for M.E. has formally commented on the latest draft of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), due to be published in May 2013 by the American Psychiatric Association (APA).

We told the APA that:

"Action for M.E. notes the revised draft of DSM-5 and remains opposed to any attempt to classify CFS/M.E. as a somatic symptom disorder either explicitly or implicitly.

Comments made previously in the APA Work Group on somatoform disorders and in public by Dr Dimsdale, the SSD Work Group Chair, are far from reassuring in this respect.

Regrettably there are still General Practitioners in the UK who fail to take CFS/ME seriously and are ill informed about how to achieve a specific diagnosis. So there should be nothing in DSM-5 that will give any support to outdated views that are severely detrimental to patient care.

The presumption that ME/CFS is a somatic symptom disorder is not supported by the increasing body of research evidence pointing to the existence of underlying physical pathology. While not challenging the underlying structure of DSM-V, in our view ME/CFS would be appropriately classified in sections S03 or S04, mild or severe neurocognitive disorders secondary to underlying physical diseases, in particular neurodegenerative diseases."

Submitted by the National ME/FM Action Network (Canada) to the APA, June 11, 2012

For the attention of the Somatic Symptom Disorders Work Group :

The National ME/FM Action Network, the association representing Canadians with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia, wrote to you a year ago asking you to refrain from including Complex Somatic Syndrome Disorder (CSSD) in the proposed DSM-5. A copy of our previous letter is attached below.

We note that, in the new version of DSM-5, CSSD has been rolled into the category Somatic Symptom Disorders (SSD). This does absolutely nothing to allay our concerns.

ME/CFS and Fibromyalgia are not psychiatric illnesses. They should be handled like other chronic physical diseases. If the symptoms cause patients to become worried or discouraged, the appropriate response would be to try to reduce the stresses experienced by patients or to increase the support they receive. As for all chronic diseases, treatment for anxiety or depression may be helpful in some cases. This is already possible under the DSM. The SSD category adds no new services for patients.

Patients with ME/CFS and Fibromyalgia feel especially vulnerable under the SSD category because these illnesses are frequently discounted or under-appreciated and, as a result, appropriate expressions of concern by patients can be perceived as excessive. Labelling the patient as over-reacting makes it easy for the health and social service systems to blame the patients for their situation and to discount their legitimate concerns. The potential for misuse and abuse of patients through the new SSD category is enormous.

We asked in the strongest possible terms that SSD be dropped from DSM-5.

June 2011
For the attention of the Somatic Symptom Disorders Work Group :

The National ME/FM Action Network works on behalf of Canadians with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia. Our organization was founded in 1993 and has many accomplishments to its credit. A leading accomplishment was spearheading the development of the Canadian Consensus diagnostic and treatment protocols for ME/CFS and Fibromyalgia. These criteria are receiving strong international support.

Another major accomplishment was publishing statistics on these conditions. Our analysis, based on a major Statistics Canada survey, showed that there were 628,500 Canadians diagnosed with one or both of these conditions in 2005 and that they experienced high degrees of disability, disadvantage and unmet needs in comparison with other chronic illness cohorts.

Diagnostic criteria are very important. DSM-5 will be used to determine who qualify for psychiatric services. Criteria are problematic if they result in false negatives (people who do not qualify for services but who would benefit from them) or false positives (people who qualify for services do not benefit from them). We are concerned the proposed new category for Chronic Somatic Syndrome Disorder (CSSD) will result in an unacceptable number of false positives in the ME/FM community.

A fundamental question is how psychiatry can help patients with ME/CFS and Fibromyalgia.

Some psychiatrists have proposed Cognitive Behaviour Therapy as a treatment for Chronic Fatigue Syndrome. A recent UK study examined the benefits of CBT for patients with CFS. Patient groups have pointed out numerous issues around the study design and how study population was selected and would reject the study as badly flawed. However, even taking the study at face value, the study showed that CBT was of minor benefit to patients, akin to the benefits of CBT for other chronic illnesses. CBT does not get to the heart of the illness. ME/CFS and Fibromyalgia are not psychiatric disorders.

Our position on the role of psychiatry is simple and clear. We think that psychiatry should play the same role for ME/CFS and Fibromyalgia patients as it does for patients with other chronic physical illnesses like cancer, diabetes or arthritis. Those patients receive psychiatric support if and only if psychiatric issues are apparent after medical and social supports in place. We would like to refer you to a document entitled “Assessment and Treatment of Patients with ME/CFS; Clinical Guidelines for Psychiatrists” by Dr. Eleanor Stein, a Canadian psychiatrist. This document describes an appropriate role for psychiatrists in assessing and treating ME/CFS, respecting the reality of the illness.

Over the years, we have heard many stories from patients with ME/CFS or Fibromyalgia who went to a doctor for help only to be fobbed off to a psychiatrist because the family doctor did not believe their symptoms or did not know how to help, rather than because the patient needs psychiatric services. This situation does not help patients – it denies their experiences, it undercuts their credibility and it distracts from their real issues. This situation does not help psychiatry either as it is called upon to solve problems that it cannot solve.

The new Complex Somatic Syndrome Disorder category could compound this situation. A patient with ME/CFS or Fibromyalgia would get a diagnosis of CSSD if a doctor believes the patient is overreacting to the illness, even if the patient is actually behaving very rationally. The patient would be labelled with a undeserved, unhelpful and misleading psychiatric label which would make dealing with the core health issues even more difficult than they already are.

The CSSD category could be very harmful to patients with ME/CFS and Fibromyalgia. We ask you to refrain from including CSSD in DSM-5 in the absence of protections to ensure that patients with ME/CFS and Fibromyalgia do not receive false positive diagnoses.

Submissions received from UK Action for M.E. and National ME/FM Action Network (Canada). So far, no other organization submissions that I am aware of. This is very disheartening given the strength of patient concern.

A copy of my own comment is published on my site in text and PDF format.

If you are unable to submit your own letter or pressed for time, please consider endorsing Mary Dimmock's submission or one of the other submissions on my site; or endorse a submission from last year with a note to say that although the criteria have been revised since the second draft, the underlying concerns remain.

In the CSSD field trials, 26% of the "functional somatic" study group met the now lowered threshold for coding with a mental health diagnosis of "Somatic Symptom Disorder." 15% of the "diagnosed illness" (cancer, malignancy and coronary disease) arm of the trial met the criteria where "one from the B type cognitions" was required.

This is the final opportunity to let the Work Group know our concerns. Please submit today, however brief and thank you to all those who have already submitted concerns.

Once registered or logged in with last year's registration details, you can submit here:

The DSM-5 Development site will remain online but will not be updated to reflect any changes made between June 15 and publication in May 2013. This is to protect APA Publishing Inc's intellectual property rights to criteria sets. It's going to be a long and nailbiting wait.

The following are the major changes to proposals for the third draft for what was known as "Complex Somatic Symptom Disorder" in the second draft:

J 00 Somatic Symptom Disorder

to merge CSSD and SSSD; to drop the adjective "Complex" and call the category "Somatic Symptom Disorder" (SSD);
to reduce the threshold for the B type criteria from "at least two" from the B type criteria to "at least one";
to include three new optional Severity Specifiers: Mild; Moderate; Severe.